'Looking at his pictures hurt': Parents still waiting for answers over incineration of baby organs
'The Voice of Our Angels' Group protesting at Cork University Hospital (CUH) about organ retention/disposal. Picture: Larry Cummins
In Katie Quilligan’s Cork home, just one photo of her baby son James remains.
It is in her daughter’s room, next to her bed.
Until recently, it was just one of several of the little boy which had been up in different parts of the home he never saw.
The little boy passed away at just two days old in Cork University Maternity Hospital in January 2020. James had been born prematurely.Â
Devastated by his death, Katie’s grief is overshadowed by the discovery just over a year ago that little James’s organs were sent to Antwerp for incineration, along with the organs of 17 other babies from CUMH — without the knowledge or consent of the parents.
According to HSE standards, organs retained after autopsy should be sensitively disposed of by burial or cremation only.
The organs of the 18 babies were initially stored in the morgue at Cork University Hospital after being released by the pathology department following autopsies.
According to internal correspondence, mortuary staff at CUH became aware early in 2020 that its burial plot in Curraghkippane’s St Mary’s Cemetery was full and the organs could not be buried.
The organs were sent for incineration in late March and early April 2020, as space needed to be freed up at the morgue due to the possibility of increased deaths at the hospital following the arrival of Covid-19.
The report was due to be released in October or November 2021 and families had finally expected to receive it on September 30. Three weeks later, they are still waiting.
Katie says: “I have even had to take the photos I had of James hanging around the house down because looking at him, I was asking myself why can’t I give his soul the answers, to find out why it happened to him. Looking at his pictures brought me hurt.”
The one photo in her daughter’s room is of her daughter holding her newborn brother.
“That is the only one. I have had to put the rest away until I actually get closure. Once I know I have the closure and know what happened, why it happened to him, how it happened to him, I will be able to bring them out again.
"Whereas I look at them and wonder why this happened to such a small little baby, why did this have to happen to my child?
She says she is not able to sleep and has also developed social anxiety.Â
“It is affecting my family too. My kids don’t get out as much as they used because I can’t go out in crowds. If I go shopping, I have to wear headphones so that when I go around the shop, I am not thinking about anything else, just my groceries.”Â
She has to make sure she is not alone when doing the grocery shopping in case she suffers a panic attack, as happened previously.
“It has happened on a few occasions," she explains.
While Katie previously had anxiety, she never had sleep issues or social anxiety before. She said she has been diagnosed with depression, for which she has been prescribed medication.
She was among a group of families who protested in June outside the hospital, in an action designed to get answers on why the organs of the babies were sent for incineration.
Just a week later, she had to focus on her wedding, where James was a very central part of the big day.
“I had his photo on a keyring on my flowers and he was part of the wedding. But he should have been there.”Â
For Laura and Fintan Kelleher, the pain of knowing their baby Hope was one of the 18 babies whose organs were incinerated without their permission continues to gnaw at them.
Laura says the constant wait for answers on why the organs were sent for incineration brings up memories of the day she and Fintan lost Hope, almost three years ago: “That's obviously extremely traumatic.”Â
She and Fintan feel betrayed by the failure to get answers: “I felt that we were doing the right thing in having a post mortem done.”Â
However, she now feels guilt over having allowed an autopsy.
“It's very hard now living in Australia, our baby is buried in West Cork and part of her was dumped off to Belgium."
Pain and anger are emotions also being experienced by Leona Bermingham, who, along with her partner Glenn Callanan, were the first to go public about the scandal in September 2021. Their son Lee died hours after Leona had given birth to him and twin brother Lewis by emergency C-section at 33 weeks' gestation.
Leona has been through therapy and took time off work because she felt unwell. She said she never suffered with anxiety prior to finding out about what had occurred regarding Lee’s organs.
While she feels stronger now, she says there were times after finding out that she was a just a shell of the person she used to be.
“Now, I am really angry and it is gone past being about me and Glenn and Lewis and Lee. There are other families. And I can’t think about another family going through what we went through.”Â
She, like Laura, is adamant there needs to be action taken on publishing and getting the Human Tissue Bill enacted.
“I am so passionate from this and I want to be able to just get closure and be able to go back and grieve Lee the way I need to," she says.
Leona blamed herself for a long time about having signed a form for an autopsy for Lee.
She describes herself as almost being emotionally drained from the range of emotions she has felt since finding out about the disposal of her son’s organs.
“It has turned to absolute anger and I don’t have anyone to direct my anger at. And I still have to get up and be a mam, and go to work and do all these things.
A spokesman for the South/Southwest Hospital Group said the date for when parents receive the report “will depend on when the final report is received”.
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